A couple of days ago, it was the one year anniversary of my diagnosis. In case you're wondering about the details, my original diagnosis in November 1996 was for Hodgkin's lymphoma, stage IIB. I underwent 14 chemotherapy treatments with the drugs abbreviated "ABVD" (Adriamycin, Bleomycin, Vinblastine, and Dacarbazine) from December 1996 through July 1997, after which I was declared in remission. I felt wonderful in August -- my husband Mark and I took a trip to the American southwest desert to soak up heat, to smell beautiful exotic flowers, to enjoy life. The months since August have left me feeling progressively unwell, as my body was giving me signals that all had not returned to normal.
This diagnosis anniversary was such a strange occasion to find a hard lump among the lymph nodes in my neck. I spent most of the afternoon today at the Cancer Agency with my oncologist. Her first palpation of the node was convincing enough for her to schedule the sequence of events that naturally follow a recurrence of Hodgkin's. There is a small chance this isn't Hodgkin's, but all the medical folks I saw today, including 3 doctors, seem quite convinced it is.
On Thursday morning (December 4th) I will have a bone marrow biopsy, something I hoped to never again face. This time I'll be heavily medicated, so the pain will hopefully be less intense. Later that afternoon I'll meet the team of doctors who run the bone marrow transplant program at Vancouver General Hospital. Friday morning I'll have a CAT scan, and Friday afternoon I'll see a thoracic surgeon about having that hard lymph node removed for further analysis.
After all this re-staging has been completed and after the final pathology report comes back on that node, I'll start 1 or 2 months of chemo (drugs abbreviated "COPP" - for Cyclophosmphamide, Vincristine a.k.a. Oncovin, Procarbazine, and Prednisode). Then I will start gearing up for an autologous bone marrow transplant. That is to say, as long as my own bone marrow is cancer-free, the transplant will be done using my own marrow. A matching donor would only be called for in the very unlikely event that the cancer has spread to my bone marrow.
The bone marrow transplant is required because after the 2 months of COPP chemotherapy, I will be admitted to the hospital for very high dose chemo. If the COPP leaves any cancer behind, the hope is that the high-dose stuff mops up what remains. That high-dose chemo is so harsh that it will destroy my own bone marrow. By having some harvested and put aside before the procedure, the doctors will be able to replenish my supply while I'm in the hospital. Without bone marrow, I would be vulnerable to the most basic fungal, viral, and bacterial infections. In fact, during the transplant, I will have to spend several weeks to months in the hospital's isolation ward.
I've been feeling unwell for some time now, so this likely diagnosis makes a lot of sense. My oncologist, bless her heart, still offers me the potential for a cure. We'll keep hoping, but the road to that happy destination looks quite rocky. I feel quite shell-shocked at the moment. I still can't believe this could really be happening.
My bone marrow biopsy went well. I can walk around almost as if nothing happened. (This was not true a year ago after my first bone marrow biopsy!) The thought of rollerblading has crossed my mind, but I'm not that bold or silly (and I'm certainly not in good enough shape). :)
The preliminary report from the CAT scan of my pelvis and abdomen is promising. It looks clear, which is encouraging. It would be best if the disease has stayed above my diaghram.
I met the team at the bone marrow transplant unit yesterday and they are friendly, patient, and highly competent. My friend Gayle, who is dealing with leukemia, was at the unit receiving blood products the same time I was there, and I felt safe in her company. If she has the courage to do all this stuff, maybe I can do it too.
I met with the thoracic surgeon today who removed one of my nodes last year. Naturally, I started by complementing him on his immeasurable talents since his work last year left me with an almost-unnoticeable scar on my neck. We compared hair -- he is balding and I am trying to get past the post-chemo look. (Would you believe he was actually JEALOUS of my thin, short post-chemo hair?!) Then we talked business. He will schedule me for the lymphectomy (I can't remember if that's really a word) as soon as he can -- by next Friday, hopefully.
Then that Friday, December 12th, all the oncologists, bone marrow specialists, pathologists, radiologists, surgeons, etc will gather at the "lymphoma conference" to make a decision. (If all the pathology reports haven't been received by that date, the conference will be postponed until Tuesday December 16th.) We've been told that the full expectation is that I've got a Hodgkin's recurrence, in which case that same afternoon (Friday December 12th) I'll start the 2 months of chemo in preparation for the autologous (self) bone marrow transplant. The odds of this being Hodgkin's are slated at 90 - 99%, depending on who you talk to. In the unlikely event that it's NOT Hodgkin's, it may be non-Hodgkin's lymphoma, it may be TB (pretty darned unlikely), and it could even be a benign condition (unlikely as well, given all my other symptoms). Whatever this is, we'll fight it, and we'll win. I do feel strong almost all the time, (though there are emotional moments when I feel frightened and sad).
I want to tell everyone that it's okay to email me or Mark. I LOVE the emails!! But please be understanding if I have to resort to replying en masse. (I'll try not to do this too often so your mailboxes don't get cluttered up.) But once in a while I'm actually up to direct replies!! We still find phone calls a little overwhelming at this point, but if you don't mind leaving messages, we'll try to return calls as best we can.
We have received lots of offers of concrete help. All you would-be laundry doers, grocery shoppers, plant waterers, back rubbers, food cookers, chemo-appointment drivers, etc (and you know who you are!) will be put to good use in good time. We're still working on formal ways to coordinate all the offers to help. Once the official diagnosis is in, we'll have some coordination mechanism set up. Thank you, thank you, thank you!
For now, I just wanted to let all of you know where things stand. Please, try not to worry about me. I'm being very well cared for, and there's good reason to be optimistic. I appreciate all your support.
Around mid-day, we found ourselves in West Vancouver, at a small church called St. Francis in the Woods, located by an isolated seacove. I thought for sure the church door would be locked, but to my surprise it was open! We tiptoed inside and marvelled over the quiet and the beauty. I sat myself at the second pew from the front and just absorbed the atmosphere. I felt very serene.
After a few minutes, some emotions welled up. Tears streamed down my face as I thought to myself "Please, please let me survive what I'm facing!" I contemplated further, and decided for the first time that if what I'm facing is the end of my life, I can accept it. I guess this is what some people call surrender. My biggest fear is leaving Mark behind, but if the grand plan is for me to go, then I must go. (That's not to say I'll go without a fight!) My thoughts turned to hopes that I can be strong enough to face what is before me. Mark sat down beside me, and we were both quiet for a few more minutes.
After leaving the church, we spent some time exploring the surrounding
waterfront. The tide was high, and the waves were lapping up against
the large rocky shore. Everything seemed so beautiful -- the texture
of the rocks, the sound of the water, the migratory birds taking a rest,
flowers swaying in the wind, wisps of clouds in the blue sky ... I felt
very lucky to be a witness to the spectacular wonder of nature.
Well, it's official now. Examination of the lymph node removed on Monday has confirmed that I've definitely relapsed with Hodgkin's lymphoma. My oncologist actually sounded relieved when she told me. She had feared that I might have been dealing with something a lot worse (yes, worse would have been possible).
On Friday, my two oncologists (I'm lucky to have two!), other lymphoma experts, the bone marrow transplant doctor, and various other interested parties will gather around the slides of my lymph node to discuss the best course of action. (I'm guessing the lymph node itself won't be there.) I'm scheduled to start chemo Friday afternoon. What will most likely happen is that I will do two months of chemo (the four drugs known as COPP) before undergoing the autologous bone marrow transplant.
Mark and I are not really surprised at this point. My body
hasn't felt right for some time now, so we basically expected
this outcome. We both feel confident and optimistic, and I feel
very lucky to have Mark by my side through all this. The support
of all kinds of friends and relatives has also been tremendously
helpful. We'll keep you updated.
The whole team of oncologists had their lymphoma conference about me Friday morning, and the news was not as good as we might have hoped. It turns out my CAT scan showed a "nodule" on my right lung that was never there before. That combined with the 2 nodes in my neck (one of which was just removed), the chest involvement, and the speed with which I relapsed all make for a worrisome situation. I'm still digesting everything the doctors had to say. Well, whatever the situation, I vow to beat this thing.
The bone marrow doc (who lit up when she realized she was talking to a patient and a patient's husband who understand statistics and the meaning of the word "multivariate"!) gave us some good news too. My bone marrow is clean, so we'll be able to salvage some from my body, freeze it, and put it back in my body after the high-dose chemo, without any special treatment.
On Friday I started the new chemotherapy regime: two 28-day cycles of chlorophosphamide and vincristine (both IV drugs taken on days 1 & 8) plus procarbizine and prednisone (oral drugs taken on days 1 through 14) then an autologous bone marrow transplant starting around mid-Feb. Wow, it's already so different from the chemo I had before. For one thing, it seems to make me more nauseated than I remember. So I'm taking a lot more anti-nausea medications after chemo. On Friday night, Mark and I had to make an emergency trip to the hospital. Five hours with a rubber catheter inserted somewhere that should never see the light of day did not make for my favorite Friday night on record. (!)
My next IV chemo will be on December 29 (thankfully, that was postponed
a few days from my birthday which is a holiday). Then a week or so later
I'll have a Hickman port surgically put into my chest to facilitate
retrieval of the stem cells for the bone marrow transplant and to
facilitate all the chemo which is yet to come.
Mark and I managed to get outside to enjoy the sunshine today. I felt semi-human today, in spite of a rough sleep last night. We drove out to Spanish Banks for a short walk along the shore, and I marvelled at the frothy waves licking up against the sand. It seemed to me like the sea should be able to wash all the cancer out of my body.
Once evening fell (and after dinner), we headed to our local community
centre to observe
the winter solstice festival! Folks were out with candle-lit lanterns;
it was fun to watch. The seasons persist regardless of what goes on
in our little lives. There is something very humbling about that.
About a month later, I heard the news that Gayle's leukemia was back, and it hit me like a ton of bricks. In my mind, Gayle was supposed to make it -- this all seemed too unfair to be real. Since Gayle had already undergone donor-matched bone marrow transplant, and since the doctors didn't rate her chances of surviving another as sufficiently high, she was told she had 3 to 6 months to live. I was devastated.
Happily, Galye was willing to spend pockets of time on the phone with me and in my company. There were more times where she was stuck in the hospital, and during those periods I tried to bring her tasty morsels or intriguing gifts. Mostly I just wanted her to be well.
When the news of my own relapse came, Gayle told me (with tears streaming down her face) how devastated she was. The news of my relapse hit her the same way the news of her relapse had hit me. It was clear that we had come to understand each other in a unique way. I consider our friendship to be quite precious.
Tonight I have gotten news that Gayle's condition has dramatically deteriorated. I saw her only four days ago -- at that time she was quite tired, but she and her partner still had plans to fly to Winnipeg to spend Christmas with family. Tonight I wonder whether those plans will materialize. Gayle has developed an acute infection and her white blood cell count and fever have gone through the ceiling. Her doctors have told her this is the sort of crisis situation that will mark the end of her life. Now they count her remaining time in days.
Gayle told me on the phone yesterday that she had hoped to survive to see the spring again. She loves gardening, and I'm sure the thought of new flowers in bloom gave her great inspiration. She said that her hopes of seeing the spring had been fading recently, and now she was scared she might not even live to see me through my bone marrow transplant in February, something she deeply wanted to be able to do. (Gayle has been a mentor to me on this front. She lent me a book about the transplant procedure and has offered me hours of counsel and guidance. I wonder how I will go through this without her holding my hand.)
Our mutual friend Linda was with Gayle today, and Gayle gave to Linda
some gifts to pass along to me. One of those items, I am told, is a
carving Gayle's partner Mo made for Gayle during one of the times
she was in the hospital.
The carving sat at the head of her bed all through
her stay -- she hopes I will bring it along with me when I go in for
my transplant. Indeed, it will sit proudly by my bed, guiding me
through the scary process Gayle pioneered before me. I love her, and
I'll miss her. She is brave, and I aim to be able to muster up even
a fraction of the courage she has demonstrated. I hope her soul will
rest safely. I hope we meet again.
I saw Gayle at the leukemia ward today. She is weak, but her spirits are still good. She is hoping to fly home to Winnipeg tomorrow to be with her mom, dad, and brother. The doctors aren't too supportive of that idea, but we'll see what happens. That girl has gusto. I am glad to have had some time to visit with Gayle today. Our mutual and dear friend Daphne was there visiting at the same time. Gayle was dozey from a sedative, but every few minutes she would awaken and say how soothing she found our voices in the background. She looked just like an angel.
I have been feeling up and down from my own chemo routine. I find I have to sleep most mornings and/or afternoons. It is hard to make firm plans around the holiday season with this kind of unpredictability, but I'm just keeping things low key.
I got some good news from the hospital today. I had been expecting to have a Hickman port put into my chest in early January, and then to start the stem cell retrieval immediately thereafter. (The Hickman is a device used to administer chemo drugs during a bone marrow transplant, and it would also be used to harvest my stem cells before the transplant). I was anxious about having this done in early January because it would leave me no time for breathing in between my two chemo cycles. I feel like everything is happening so quickly (as much as I want it to so I can get on with my life again). The news I got today is that the Hickman insertion and the stem cell retrieval can be postponed until after my second cycle of chemo ends! This makes me so happy! (The Hickman requires a lot in the way of daily maintenance because it protrudes through open skin, so the less time it is in my chest, the less chance of infection or trouble.) Now the Hickman procedure, the stem cell collection, the high-dose chemo, and the transplant can all take place back-to-back starting in early February. This frees up the beginning of January so Mark and I can take time to digest some of what is happening to us! I can recover from some of the chemo without undergoing surgery for a while! And we can just spend time enjoying each others' company, savoring life, experiencing ...
I feel very grateful right now to have a reprieve coming up in January during which I can enjoy life, temporarily liberated from the nausea and encumbrances that come with my cancer treatment. I feel lucky tonight to have dear friends who care for me and who send good wishes and prayers. I feel blessed to have family by my side, to have my health for the moment, to have a roof over my head, and to live in a safe part of the world. I treasure every moment I spend with new friends and old friends. I am grateful for the ability to think and assimilate my daily experiences. I am lucky to experience both happiness and pain.
Tonight Mark and I exchanged Christmas gifts a bit early. I cried when I read the card he wrote to me -- a beautiful ivory-coloured card with a picture of a gold shell on the front. Inside he wrote, "Listen, and when you are alone and hear the sound of the sea whisper your name, it is me." He says one reason he wrote that is to remind me that even while I'm in isolation for my bone marrow transplant, he will be with me. I feel loved.
Today Mark and I took a walk around Lost Lagoon at Stanley Park. We brought along birdseed for the migrating ducks and peanuts for the squirrels. That is one of my favorite ways to spend a lazy afternoon!
The past couple of days have been quite reflective for me. I guess the overwhelming emotion I am experiencing right now is gratitude. I feel lucky to be alive, in the company of people I love, comforted by wonderful memories, and taking in new invigorating experiences. Every day provides new opportunities to do things with my life that might make a small difference to others.
It is hard for me to articulate in words how close I feel to a lot of people right now. So many folks have reached out in person, by phone, by mail, and via the internet (from locally and from around the globe), and they have all touched me profoundly. There are people I have never met in person (from the Hodgkin's mailing list) who have given me more inspiration and encouragement than I would have thought possible. I have dear friends from my high school and university days who have revealed quite boldly and touchingly how important I am to them. Family members have reached out and expressed their love in no uncertain terms. My husband has been supportive beyond what I would imagine to be humanly possible. New friends from various cancer circles have provided unconditional love ("love among strangers" is how my late friend Russell characterized this phenomenon). Family friends, acquaintances, people I meet in my daily activities, virtually everyone I come across has something meaningful to add to my journey. How blessed I am to find myself in such a community.
It is a cozy, wet, westcoast winter evening, and I'm safely snuggled up in pink flannel pajamas my mom gave me for Christmas. She gave me three pairs of PJs; I think she is trying to make sure I'm as comfortable as possible! I am tapping on my laptop as I lay stretched out on my living room floor, surrounded by candles and listening to classical music. My cat Macska is keeping me company as only a cat could do. Eyes closed, ears perked, whiskers tucked, ready to spruce into action should she hear her name whispered. (Should you wish to rouse her, her name is pronounced "Much-ka", and it means "cat" in Hungarian. We named her so as a tribute to my late dad when we first got her 3 years ago. She is such a dainty cat.) I enjoy the luxury of lounging around my home tonight, noticing the candlelight flicker shadows on the walls, hearing the music interlude with tapping raindrops on the windows. Emotionally I feel settled.
Physically, my body is giving me mixed signals. The throbbing chest pain that had been screaming "Relapse!" for months has faded into a dull ache, and for that I am grateful. I will be happiest when I feel no more pain in my chest. The chemo has not come without side-effects. The vein used to administer the IV chemo last week has started feeling quite painful. This was the reason I had a catheter surgically implanted in my arm for my last course of chemo. This time there will be no point for a catheter to be put in my arm -- I only have three more sessions of IV chemo left in this course, and for the high-dose chemo and bone marrow transplant I will have the Hickman catheter implanted in my chest. I have been noticing that the oral chemo I take in the morning (a steroid) makes me very wired, to the point that I can't settle down at night without sleep-enhancing drugs. And the oral chemo drug I take at night makes me feel nauseated. I am headachy most of the time during the day. My energy level is up and down, but I seem to have zero reserves for exercise. Poor Mark suffers because of this -- the guy doesn't get any exercise unless I do. SOMEONE please take the guy out for a jog! :)
Here is my latest update in the quest against the Hodgkin's relapse. (Do you think there's a sci-fi screenplay in there somewhere?! Needs work ...)
I had my second IV chemo of this round yesterday, and things are going a lot more smoothly than they did after my first dose 10 days ago. I seem to have the nausea under better control, which is a real blessing. And we didn't have to make any emergency hospital visits this time!! Woo-hoo!
The holidays have been wonderfully restful for us. We visited with some friends, we spent quality time with family, we enjoyed nice times with each other... Life is good!
I had a visit from a home-care nurse yesterday, and she told me she is available to answer questions and provide home-based support for a lot of what I'll be going through. It is good to know she is there. She is also going to be trying to arrange for us to have 3 hours of weekly help with house-cleaning. (It's not that we're really messy or anything, but SOMEBODY'S got to pick up Mark's socks! Okay, okay, Mark's not THAT bad about leaving socks around, be he sure isn't crazy about scrubbing pots and pans... Truthfully, he has been an angel, helping out way beyond the call of duty. I shouldn't poke fun, but I just can't help it!)
The next week or so will be a little slow for me as I recover from this round of chemo. My next two IV chemo dates are Jan 16 and 23, immediately after which I'll have the Hickman port put into my chest for the stem cell retrieval. It looks like I will be checking in for my stay at the bone marrow transplant unit (one of THE top notch facilities by North American standards, I'm told) some time in February.
Thanks for all the supportive words and encouragement.
My friend Jim Storey and I went to St. Paul's Church in the West End of Vancouver this morning, so we could "walk the labyrinth". Similar in some ways to a maze (but with one clear path in and out), the labyrinth is a replica of a 700-year-old gothic design on the stone floor of Chartres Cathedral in northern France. I expected our local labyrinth replica to be flooded with both the curious and the skeptical this morning, but when we arrived, there were only about half a dozen other people on the scene.
The room was fairly quiet with a soothing trace of gothic music in the background. As I took my first steps into the cylindricly-shaped pathway on the floor, I felt a little awkward. People gravitate toward this site for various reasons: for spiritual enlightenment, to get closer to God, to reflect on life's meaning, for a chance to experience "walking meditation". What would this labyrinth walk bring me?
I just let my thoughts flow naturally as my sock-clad feet softly traced the path. My mind was flooded with gratitudes and affirmations: "I love life, and I'm so grateful to be here!" I turned a gentle corner in the circuit. "The cells in my body are working hard. I am getting well!" My shoulder brushed softly alongside the arm of another woman walking the labyrinth. "I love flowers, mountains, air, wind, water, birds, ..." I could hear the floor creaking beneath my feet as I wound my way through the sacred geometry.
At some point, I found myself approaching the centre of the labyrinth. The thoughts flooding my mind were about forgiveness, release of resentment, openness. The word which overwhelmed my consciousness was "absolution". I don't know where it came from or why it was there, but I understood deeply the meaning of that word in my life at that moment. I forgave myself for mistakes I of the past, and I forgave others for times they may have hurt me. I felt very peaceful. I crouched quietly in the centre for some time. Others came and went. I had no concept of the largeness of the room I was in. For me, there was only the centre of the labyrinth right then.
The walk back out through the circuit was actually quite different from the walk in. I did not feel at all as though I was re-tracing my steps. I just listened to my thoughts, let my feet step softly and slowly, and existed in the present. The whole experience lasted about three quarters of an hour, but it seemed to go by much more quickly. I expect every time I go back to walk the labyrinth will be a little different ... I expect I will go again.
From the pamphlet I picked up at the church: "Walking the labyrinth is a spiritual discipline that invites us to trust the path, to surrender to the many turns our lives take, and to walk through the confusion, the fear, the anger, the grief that we cannot avoid experiencing as we live our earthly lives. The labyrinth is a place where we can open ourselves to the Holy Spirit. We can ask for guidance and pray for ourselves and our loved ones. It calms the confused mind and the chaotic, fearful heart. It allows us to release all that is in our way of relating to the Divine: our hard-heartedness, our judgements, our impatience. The healing power of gratitude often visits the heart."
Today my friend Linda and I went out to see an afternoon movie. She and I know became friends at the Callanish retreat we attended last spring. After the movie, we decided to visit with Gayle, another Callanish friend we both have in common. (I have already written a lot about Gayle above). Linda and I have both been profoundly affected by Gayle's cancer relapse. We've both tried hard to be "present" for Gayle. However, we both feel strongly about not imposing our presence on Gayle and her support network unless our company is a valuable addition. Happily, we seemed to fit right in today!
Gayle's home is bustling with people. Her community is responding very admirably to her need for support. It is reassuring to see Gayle's friends, family and partner all managing well under the tremendous pressure of her impending death. It's hard to write that phrase, "Gayle's impending death". That is exactly what we are witnessing, though.
Until today, I was quite frightened about the prospect of Gayle dying. I have already begun mourning the loss of this dear friend. I know death is inevitable for all of us, but even after devoting a great deal of time and thought, there is still so much I do not understand about the process and the aftermath. Surprisingly, to see Gayle and to spend time with her today was incredibly reassuring; her words comforted me. (I do not dare attempt to paraphrase the meaningful ideas she conveyed, for I could not begin to do them justice.)
My hair has started to thin, which is an emotional event since it reminds me I will be sporting the full bald look once I start the high-dose chemo. Shortly after noticing that my hair loss has started, I also noticed my first full curl has appeared! My hair has been growing in with waves and the promise of curl, but this is the appearance of tresses that look anything like the old familiar ringlets! I have decided to acknowledge that this is an impending loss which makes me a little sad, but it is also a source of hope. Soon the transplant will be behind me, spring will be upon us, and my hair will soon be growing back. I will live to have long bouncing curls once again.
Mark and I leave tomorrow morning for an amazing week of rest
and relaxation; it almost seems too good to be true. I don't think
I will fully believe we get this break until we are in the midst of
it. This may be our last real chance to escape for many months.
(Tempting as it is to bring my laptop along, I have decided
against the idea!) I will be describing all the events and healing
images we come across upon our return.
The break away from Vancouver was most excellent. I think Maui is the most healing place on earth! We were so lucky to have a week open up in the midst of all my treatment, and we were even luckier that my oncologist gave us her blessings to go. (Happily, I didn't need to dip into the emergency supply of "just-in-case" drugs she asked me to tote along.) My energy level shot right up as soon as we got off the plane, partly due to the great timing with respect to my chemo treatments. The weather was warm and sunny (I wore lots of sunblock), the air was deliciously heavy with the scent of tropical flowers, the breeze was soothing ... We ate more macadamia nuts, papayas, and avocados than I previously thought humanly possible. We stayed in a condo with a balcony overlooking the sea, so at night we were lulled to sleep by the sound of the waves. We saw humpback whales from our balcony (one momma whale was nursing her nine-day-old baby), we snorkelled, we strolled through tropical rainforests, we laughed, we watched sunrises, ... Both Mark and I really needed this opportunity to feel alive and happy. My upcoming treatment is going to be even rougher than the past couple of months (or the past year -- hard to believe). Armed with all these wonderful memories, I feel ready to face what comes next.
We almost didn't make it back in time for my chemo appointment
on Friday. Our flight home was delayed more than 7 hours, so we
arrived back in Vancouver at 4:30 am, just a scant few hours before
I was due at the cancer clinic! This chemo was a tad rougher
than the last one. I'm resting and catching up on sleep in
preparation for my Ph.D. defence on Wednesday and my next chemo
on Friday. Nothing like a full plate!
Gayle invited me and a couple of the other Callanish retreat folks over to her place for lunch today. She is showing more signs of failing health as the leukemia takes over her body. But her strength of character and her emotional confidence are an amazing source of inspiration to everyone. I am so glad she is still alive -- I worried that I would never see her again when we left for our trip to Hawaii. I sent Gayle and Mo a postcard during our time away, but I wondered if they would ever manage to read it together. Happily, it looks like they will (assuming Canada Post cooperates)!
Next Wednesday night, we have our monthly gathering of anyone who has attended any of the five Callanish retreats. (I attended the fourth retreat last March.) In the past, there have been anywhere from two to twelve participants present at these monthly meetings. We have a sharing circle where we talk, light candles in memory of participants who have died since our last meeting, hug, and share. It's always a great chance to learn from others facing similar circumstances and to assimilate my own private thoughts. Gayle is hoping to be able to make it to this meeting, in spite of the difficulty she faces in being mobile. I would sure be happy to see her there.
After lunch, Gayle and I went to her room so she could find a phone
number to give me. (Now, in the midst of her own time of need, Gayle
is thinking of a
friend in Ontario whose husband is dying of lymphoma, and she was retrieving
their phone number so I could have a mutual friend in Toronto call them
up to let them know about local support groups and such.) While
we were chattering in her room, Gayle offered me a tremendous
pearl of wisdom. She feels that she has learned the meaning and purpose of
her life: to be in the moment and to enjoy each precious
opportunity as it presents itself.
Beautiful. She also feels that her death is not an ending. She
feels instead that she is about to embark on an important mission, though
she knows no details.
My own life has become busy lately. The oral chemo I must take for the next two weeks comes with a bunch of nasty side-effects which I really don't enjoy. But I am getting better at keeping my mind off the discomfort. I had IV chemo last Friday, and I will have more of the same this coming Friday. Plus I still have preparation to do for my Ph.D. thesis defence. (It is less than 36 hours away now!) People tell me they aren't sure if I am brave or crazy to defend my thesis now. I may be crazy, but it means a lot to me to try to wrap this dissertation up before I go in for the bone marrow transplant. Part of me is very frightened about not surviving ... I try not to listen to that tiny voice, but I'm such a perfectionist that I just have to do my best to complete my taxes, my thesis, and my house-cleaning before checking into the hospital!
Speaking of hospitalization, a lot of the pre-admission tests and procedures
are filling up space in my calendar for the next couple of weeks. I'm
scheduled for an electrocardiogram, a 24 hour urine test (don't ask), some
nuclear medicine tests, xrays, blood tests, pulmonary function tests, and
a bunch of other stuff that is sure to keep me busy. The current
goal is to find me a bed at the Cancer Agency for the week of February 9th.
I successfully defended my Ph.D. thesis at UBC this morning! Phew! It's done! You may now unofficially call me Dr. Lisa. :) I am so relieved to have this finished. I couldn't have done it without the help of my thesis committee members who so skillfully guided me through my studies. Plus the moral support of friends, family, and colleagues has been wonderful. You should see how *long* the list of acknowledgments is inside the front cover of the final version that will be bound and archived in the library.
Time for a long nap.
It's been a long day of busy stuff at the cancer clinic. I saw my oncologist today for the last time until after my transplant. It was a strange parting; It's always hard for me to leave the familiar behind in these medical situations. From this point on, I'll be under the care of the bone marrow transplant unit. After my transplant has been successfully completed, I'll shift back into regular check-ups with my oncologist and the lymphoma team at the cancer clinic.
My friend Christina and her baby girl Jordan accompanied me today. In between my doctor appointment and my afternoon chemo appointment, the three of us went out for lunch. Christina treated in celebration of me completing my doctorate. (What a sweetie!) The chemo ward was buzzing with exciting with Jordan on board. Everyone (nurses, patients, visitors) marvelled at her beauty and good temper. It was really fun catching up with Christina today -- the day had a nice calm pace to it.
I am hoping that today will have been my last time to sit in a chemo chair
at any cancer agency. In a couple of weeks I will embark on the high
dose chemo and bone marrow transplant. (But I will be lying down in a comfy
bed for all that!)
I know I have serious fears about surviving the procedure (there are all
sorts of complications that could pop up) and additional fears about whether
this course of treatment
will be enough to finally put the cancer in remission. But I try
not to dwell on those dark thoughts. I know that right now I have
wonderful opportunities before me, and every day I experience immense
joy. Those positive thoughts are what I hold on to. The love, the
pleasure in the moment, the strength and beauty of friendship, the
power of the mind, ...
I had a good cry tonight. My mom was over, and some of the fears that have been resting in the back of my mind came to the surface. As much as I try to focus on the positive and as grateful as I am for every moment of my life, I am struck by the paralyzing realization that when I go into the hospital for the transplant, I may never return home. This fear does not dominate my thoughts -- it just lurks beneath the surface, and this evening it just happened to emerge into the forefront of my consciousness. It is a basic and primitive feeling; it makes me uncomfortable.
I know none of us knows exactly when we will die. And I know each of us will die. Yet my mortality is more apparent to me now than it ever has been before.
On Saturday, a bunch of us held a healing circle for Gayle, in her home. I had been at the hospital for a dose of chemo the previous day, so I wasn't feeling physically great. But the experience gave me a real emotional boost. All of us who were there (including Gayle's parents, her roommates, her partner, and several of us who know her from the Callanish retreat), called forth any protective spirits we could muster up. I thought of my dad, who died exactly six years ago today -- January 25, 1992 -- and I asked him to give guidance to Gayle right now.
Shortly after my dad died, I had a dream that he was trying to contact me by phone. In this call, he was trying to arrange for the two us to meet so he could help me in some way. In his life, his biggest desire was to make people happy, and in this dream he was trying to maintain that tradition even in spite of his death. I was trying to communicate to him in this dream that we couldn't meet, that he was dead, that he couldn't help me any more. The communication was garbled, though. Dad's messages were getting through to me, but I was having trouble making him understand what I was trying to say to him. In spite of my protests, Dad maintained that he would be able to meet me and help me. That was the end of the dream. I think maybe Dad can help Gayle right now, since I have asked him to. And I think maybe someday he will help me -- maybe he is already helping me. Maybe he is no further away than perched upon my shoulder, from where he lovingly and silently watches.
Gayle maintains a strong belief that she is embarking on an important
journey. She says her body is slipping away, but she is aware of
something beyond this existence. That comforts me right now.
A little update on my progress. My last outpatient IV chemo was on Friday, and I'll be finishing my oral chemo in a couple of days. (I'll be sooooo glad ... I've been feeling sooooo sick.) On Feb 6, I'll start injecting a drug to boost my bone marrow's production of stem cells. Those stem cells are the little guys we will be harvesting from my blood, freezing, then reinfusing into my system after the high-dose chemo wipes out all the cancer. I will be calling in lots of memories of Maui sunrises during that time. Good thing we had a chance to take that break.
Feb 9 is my big hospital check-in day. I will likely be admitted to the BC Cancer Agency, but that depends on where a bed is available. I may not find out where I'll be admitted until the last minute. Feb 10 and 11 will be for the stem cell retrieval. The high-dose chemo and the transplant will get going immediately thereafter. This whole process is so daunting. I have been writing a bit about some of the scary thoughts going through my mind. I feel very determined, though, to be strong. I know many aspects of what I am about to face will be overwhelming, but I take inspiration from many sources, including people who have done this before me. I have communicated (both by email and in person) with Hodgkin's survivors who have been through an autologous bone marrow transplant like the one I will be having. I also know very well what my friend Gayle went through in having an unrelated donor transplant. (I speak with her by phone or visit her when she has the energy to spare. Her leukemia is advancing rapidly, yet her spirit remains strong.)
Lots of people have been asking me for info on becoming a bone marrow donor (not for me -- I don't need a donor -- but lots of other folks out there sure do)! And several people have told me they recently signed themselves up to be on the bone marrow and/or platelet donor registry. What a gift to humanity! In order to facilitate future requests, I have made some additions to my web site:
1/ I list all the bone marrow registry information sessions to be held in the Vancouver area for 1998 (including Surrey and Langley). If you want to simply call and find out the location of the next one that is convenient for you, the number to dial is (604) 737-1811.
2/ For people outside of Vancouver, I provide a link to a www.marrow.org, a web site which gives international information on signing up for the bone marrow registry.
You can read more about both of these additions by going to my Links to Information about Bone Marrow Transplants. If you need any further info, please don't hesitate to ask me. And please know that I certainly don't expect anyone to sign themselves up ... I think putting your name on the registry is a totally personal choice!
Back to rest mode for me. My cat keeps me warm (but that's only
because she is trying to take over my entire chair), Mark keeps
my water glass full (actually, he does MUCH MUCH more than that!),
and all of you keep my mailbox full of love and laughter. Keep
For the past couple of days, I have felt some of my energy returning. Last night was my last dose of oral chemo, and it has been an entire week since my last IV chemo. My body is slowly rebuilding so I feel stronger today than I have felt in a couple of weeks. Of course I'm taking advantage of this energy surge by completely over-doing it! I went out to UBC yesterday to pick up the boxes of my office contents which a couple of my classmates kindly packed on my behalf. It's amazing, but just lifting those heavy boxes really wore me out. I felt completely drained after a miniscule amount of physical activity. The past couple of years of fighting cancer have really taken their toll physically, and the cumulative effects of the chemotherapy just compound the effect. Amazingly, I have never felt emotionally stronger than I do right now.
My emotional strength comes from a number of sources; more than I could ever articulate here (though I have tried listing some of what makes me feel loved and supported). In fact, I feel almost overwhelmed by the volume of support I am receiving. Every day I get more messages from people who feel touched by my quest. Some people send cards, some write email, some call, some folks offer a silent hug or a touch on the shoulder. Each individual bit of contact gives more fire to my spirit ... I feel insufficient in my ability to fully and properly acknowledge the impact people are having on me; I feel a desire to archive my experience. This web site is a small and humble attempt to do that -- I hope I am accurately conveying what I am going through. And I hope I am adequately communicating the role other people are playing in my journey. I could not bear this load alone.
I have received considerable feedback that people are being touched by my
words. I want to continue expressing my emotions, and hopefully others can
learn something important from this journey of mine. The landmarks
of my experience haven't been laid out in concrete, but I hope hidden
between the descriptions of sunrises and the admissions of fear, there
is some wisdom that helps make others' lives a little more meaningful.
This past weekend was loaded with fun, as my cousin was visiting us from San Diego for two days. I asked her a couple of weeks ago if she might consider a spontaneous weekend visit to our home, and she was actually willing! I wasn't as strong or well as I would have liked (my stomach has been really upset, and my energy level has dropped off), but we still had a blast. Tina and I have been friends, not just cousins, since childhood. I am so glad she made it up to Vancouver for this visit.
We took short strolls (mostly to Starbucks), we sat around the apartment chattering, we looked at photos, we ate too much ... This morning, Tina even accompanied my Mom and me to the relaxation group I often attend at the BC Cancer Agency. I felt badly that Tina got such a close-up look at the daily details of my illness, but she also saw first-hand how determined I am to get well. All in all, it was a happy and memorable weekend!
On Wednesday, Mark and I are heading off to the luxurious
located in Tofino (on the west coast of Vancouver
Island). We will be there for two nights of relaxation,
then the night we get back I will start the injections to boost
my bone marrow's production of stem cells in preparation for the
transplant. Both of us are really looking forward to this
chance to get our mind off things for a short while.
(We aren't even putting in a request for sunshine ...
We would have just as much fun in stormy weather!)
(Written at the Wickaninnish Inn at Tofino BC, and later transcribed to computer)
We stood on Long Beach, near Tofino on Vancouver Island, in the midst of storm season. If we listened carefully, we could hear the soft tinkle of raindrops landing on the shells and sand beneath our feet. Our bodies were warmly protected from the downpour by the bright yellow slickers provided by the inn where we stayed. The sound of surf pounding the shore was rhythmic and soothing.
We spent a bit of time exploring tidal pools along a rocky stretch of shoreline. The sea creatures habitating the water-logged grottos seemed as oblivious to the world above the surface of the sea as we typically are to their awesome surroundings. Having had enough of risking life and limb on the slippery rocks, we returned to the soft, wet sand where we played a game of tag with the incoming tide.
Soon we noticed we were approaching a beautiful flock of shore birds,
so we stopped in our tracks to be observers. Perhaps thirty minutes
passed as we witnessed the comings and goings of these sandpipers.
They marched in unison on the sand, sometimes seemingly without
purpose or direction, but always in strict pattern as a community.
When they finally took to the air, our jaws dropped in marvel. Seeing
the sandpipers in flight tickled all our senses: the sound of the rapid
flap of their tiny wings ... the sight of shifting shades as their little
bodies turned in synchronicity ... the cool touch of the breeze against
our faces ... the taste of sea salt ... the smell of fresh air blowing
in over the vast Pacific ... This is energy, this is healing. Such is
the stuff of which lasting memories are made. Mission accomplished!
Gayle has died. I found out a couple of hours ago that she took her final breaths this afternoon, surrounded by people she loved. She was in a lot of pain near the end, and she was frightened about the journey before her. But her pain is over now. When I arrived at her home a couple of hours after her death to be with her family, my first impulse was to head to the sink to wash my hands, as visitors always did to reduce Gayle's exposure to bacteria. A part of my mind was still directing my body's actions as if Gayle were still with us. It is so hard to wrap my mind around the fact that she is gone. When I went into her room late this afternoon, her body was arranged neatly in her bed, adorned by her favorite clothes, covered in her cozy orange blanket, with her cat Sasha cuddled at her feet. In fact, for the entire hour I was in the house, Sasha remained at Gayle's feet -- it was quite touching.
I last spoke with Gayle on the phone about a week ago, and I told her how much I love her. She had hoped to be a guide for me as I go through my bone marrow transplant, as she knew lots of the ins and outs about surviving such a procedure. She was frustrated knowing that she would likely die before my transplant was over. Gayle's Mom told me tonight that Gayle will still be watching over me all through my hospital stay. Somehow, I believe that is true.
When Gayle and I first met almost a year ago, she looked like an "Olivia" to me, more so than a "Gayle". This was an odd sensation I had never before experienced. When I told Gayle about this bizarre urge of mine to call her "Olivia" every time I saw her, she laughed and said that as long as she had known me, she had wanted to call me "Holly" instead of "Lisa"!
Gayle was a very special friend. Her cremation will be held
Monday at 3pm, and memorial will be held in a couple of weeks.
I'm saddened by the fact that I will be confined to the hospital
during these important moments, but I think Gayle would understand
that I will be on an important mission.
Well, tomorrow is my big day for checking into the hospital, so I have been busily running around trying to tie up loose ends. It has been a little hectic, but not too overwhelming. My friend Jim and I are hoping to walk the labyrinth tomorrow morning, but it's going to depend on how much energy I have. My energy level will depend on how many of my zillions of chores I get done quickly tonight. I am due at the hospital at 10am, and the labyrinth is open 8:30 - 9:30 am. It will be a little tight, but can you think of a better send-off for my journey?!
For the next several weeks, I plan to try to hold onto the sentiment that, in some sense, both Gayle and my dad will be right by my side through this entire hospital stay. It can be easy to lose sight of that notion; some times in the past I have had to work really hard at remembering how close my dad is ... This afternoon, my mother and I went up to my dad's grave. We both shed a few tears about what I am about to face, fear of dying, etc ... It was a good moment. In a way, I am actually glad that my dad doesn't have to watch me going through this ordeal. I'm sure it's torture for my mom to watch her big baby Lisa dealing with a life-threatening illness.
In a few minutes, I'll be sitting down to one of my favorite
dinners (pasta with red pepper sauce) with the man I love.
What more could I want? I feel ready to get myself well again,
so I'm eager to get into the hospital to take care of what needs
doing. I feel excited about getting on with my life!
I will be leaving for the hospital in a few minutes, but I just wanted to write a couple of thoughts before I head off. It's a gorgeous sunny day out today. I can see the snow-capped mountains in the distance, there are a few puffy clouds in the brilliant blue sky. Someone told me over the weekend that I should focus on the fact that it will be spring when I get out of the hospital. There will be flowers in bloom all over the city, and the air will carry a fresh scent. I think what I most look forward to seeing this spring is Vancouver's streets bursting with the pink and white flowers of cherry blossom trees.
I awoke before dawn this morning and briefly opened my eyes to see
(from where I lay in bed) a close-to-full moon hovering in the sky.
That was a comforting sight; I'm not entirely sure why. I think it
has something to do with something my friend Ann told me in a letter
from her winter location in Mexico. She told me that each night she
looks up at the moon, and she is reminded of all of us who went
through a Callanish retreat together.
(Callanish is where I met Gayle and other really special friends
At that moment, she sends each of us love and warm thoughts.
She asked me and others from the Callanish group to do the same
whenever we get a chance. I guess that explains the warm feeling
I got when I saw the moon early this morning. It's all about love
and a sense of community.
After all the build up about going into the hospital for a long time, I am back home after one night! (Everything looks good with the temporary port that was put into my neck yesterday.) There must have been some kind of major miscommunication -- when I first arrived at bone marrow transplant daycare, no one was expecting me. So it took a bit of work to convince the nursing staff that I really was supposed to be there! After a few phone calls and a couple of hours of waiting, it looked like everything was ready to go. However, the orderly who arrived to take me to the intensive care unit for the surgery was puzzled that I had no chart and no identifying wrist-band. Fortunately (?) she was willing to cart me off anyway. I was still wearing my street clothes on the stretcher, so we got a few strange looks as we navigated our way through the underground tunnels connecting hospital units. (I had tried to tell everyone I was happy to walk myself to wherever I needed to be, but it was insisted that I ride on a stretcher.) When we arrived at intensive care, the greeting nurse didn't want to accept me. I was already tired from a morning of waiting, and now the nurse and orderly were arguing about hospital procedure. I must have sounded pathetic when I started begging the nurse to call the bone marrow transplant daycare unit to verify that I was really supposed to be there. She patted me on the leg and said "Don't worry, we'll take care of you," and then the orderly disappeared. Phew, I squeezed in through the gate!
Having a procedure done at intensive care when you have no chart is not an easy feat. Several nurses asked me my name, and the doctor asked me exactly what procedure I was supposed to be having done. When I replied that I was there to have a temporary central line put into my neck, the doctor commented that the neck-line would be higher risk than a line in my groin. He said with a neck-line, there would be a one to two percent risk of puncturing an artery or lung -- great! But there would be a down side to the groin-line as well: I would be completely unable to walk until the line was removed. When the doctor left the room for a moment, a nurse reassured me that in all her years in intensive care, she had only seen a couple of cases like the doctor described, and that it wasn't as bad as it sounded. A punctured lung, for instance, is often not detected until the doctor looks at the standard xray done after the procedure, and the remedy is not as traumatic as one might suspect. I elected to throw caution to the wind and have the neck-line put in as planned.
You may want to skip this next paragraph if you are at all squeamish about medical stuff. Just before the procedure began, my eyes were covered with a cloth and I was given a local anaesthetic for the area around my neck. The doctor commented that my jugular vein was the best he had ever seen (honest, I'm not just saying that)! An incision was made into my jugular, and over the course of the next 15 minutes, the port was guided into the vein (complete with a tube going down to the entrance of my heart). I could hear all kinds of interesting side effects during the course of the procedure (like the resident doctor leaning an inch or two over my ear, trying to breathe in spite of his congested nose, -- happily, he wore a mask). I could smell saline solution as it was injected into my vein, I could feel blood dripping down to the back of my neck at various points ... As I was describing all of this in my play-by-play commentary to the doctors and nurses (hey, why hold back?), one of the doctors decided I have "heightened senses" and opted to give me extra local anaesthetic before starting to stitch me up. Good thing he did that, because as he was doing the stitches, tugging and pulling, he vocalized that I have "really tough skin".
Meanwhile, I was expecting to have a hospital bed all lined up and waiting. Well, the mix-up that had already been an overriding feature of my day had lasting effects. I was offered a make-shift room for the night in the "transition room" in VGH's bone marrow transplant ward. This is the room where patients who have had a transplant can stay for a few days as they make the transition to the outside world. It's where patients learn to become more independent. So instead of being furnished with a hospital bed for instance, there is a pull out sofa-bed. This was kind of nice, because it meant my husband was welcome to spend the night there with me! (He claims it was not the room's big-screen TV that made him decide to stay.)
I was actually pleased to discover that I could go back home
after one night of observation in the hospital. Most of
what remains to be done this week can be done on an out-patient
basis. I had three hours of stem cell collection done this morning,
and I will have more of the same tomorrow and possibly the day after
that. Once all my stem cells are collected, I can have the
temporary port removed. We will likely postpone installing
the Hickman port until we have a date confirmed for a bed
at the cancer agency. I'm quite anxious to get going because
my Hodgkin's symptoms are ever-present ... The sooner the
transplant is done, the better, as far as I'm concerned.
But for the time being, I am happy to get a little bit
more time to relax at home.
Unfortunately, the yield from my stem cell retrieval process was quite poor. I found out a few hours after the first retrieval that my counts were disappointingly low, but we did a second run the next day just in case my counts were still increasing. Alas, there was no improvement, so the neck port was removed later that afternoon (thanks to the generosity of Steve Ginsberg (sp?), one of the doctors at the VGH leukemia and bone marrow transplant unit who patiently waited while I rushed in to have the port removed as soon as I found out I wouldn't be doing any more stem cell retrievals).
The two bags of stem cells and miscellaneous blood products that were harvested will be kept on ice to be returned to my body later. However, since the quantity will not be sufficient to re-establish my blood system, doctors will need to harvest some bone marrow from my body before I get the high-dose chemo. This bone marrow harvest will be done on Wednesday at the BC Cancer Agency, and I will spend that night in the hospital. If there is a transplant bed ready for me at that time, I will go straight into the high-dose chemo. If there is no bed (and there is a good chance there will be no bed at that time), I will go back home to wait. Apparently, there have been a lot of emergency leukemia cases being admitted to the BC Cancer Agency's isolation ward where transplant patients like myself are also treated. Gayle was one of those emergency leukemia patients not too long ago; in fact I often visited her during her various hospital stays. During her December stay, she had a severe fever and the doctors needed her in the BC Cancer Agency's isolation ward while they tried to pinpoint and treat the source of the infection. Many of us thought she might die at that time, but she showed with great determination that she was not ready to leave just yet. (Speaking of Gayle, her memorial will be this Monday. I feel tremendously lucky that I will be present for the celebration of her life. Had things gone according to plan, I would already be in isolation, and I would be missing this important event.) I can feel my Hodgkin's symptoms every day, so I am quite anxious to get started on my transplant. But I can certainly understand why emergency cases similar to Gayle's might take precedence over my own case right now. So I wait, and I try to be patient and serene.
After the two days of stem cell retrieval, I felt pretty weak and tired. I guess given the fragile state of my body these days, losing a bit of blood knocked my energy level down a noticeable amount. I must say it is a nice change to be able to sleep again though. I have been taking naps, going to bed early, sleeping in late through the morning ... What a happy transition from the past two months during which I routinely had trouble falling asleep at night and during which I often awoke for several hours in the middle of the night. This past week, my cat has been very cooperative by gladly cuddling up during my frequent rest periods.
I have been enjoying my time at home too. Although most of my time
is spent in a reclined position, it has been terrific to be in familiar
and comfortable surroundings. Mark's company has been wonderful as well.
Both of us have been anxious about all the medical procedures I
have been undergoing, so a few days "off" are welcomed by both of us.
Gayle's memorial was today. The gathering was as special and unique as she was. The weather was gorgeous, the location (Heritage Hall on Main Street) was perfect, the room was full of friends, family, and acquaintances who thought the world of her. There was time for people to stand up front to share memories and stories about Gayle, there was singing, there were candles, photos, food, laughter, and tears ... I felt so lucky to have had a chance to attend.
Had things gone according to the original medical plan, I would have been stuck in isolation today instead of free and mobile enough to join in the celebration of Gayle's life. As fate would have it, as soon I got back home from Gayle's memorial, I retrieved a phone message from the hospital telling me that I'll be admitted tomorrow. Wow, things happen fast when they are finally supposed to!
This morning Jim and I walked the labyrinth again. We had hoped to make
it to the labyrinth last week (on the morning of my originally planned
hospital admission for the transplant). I wasn't up to it that morning,
and last night Jim suggested we try again today. It was terrific. The
moment that stands out most in my mind is when I was nearing the end of
my walk through the labyrinth when I noticed sunlight streaming into the
hall. I stopped when the light caught my eye, and realized I was being
bathed in colours from stained glass. I felt warm and safe. I do love
It's just about midnight, and I'm sitting here receiving my first ever blood transfusion. What a strange feeling. I remember sitting with Gayle one day several months ago, as she received blood. I marvelled at the profound change in her energy level as the blood gradually moved from the donor's bag into her body. Before the transfusion started, she was void of any energy, barely able to sustain conversation. Within thirty minutes of the start of transfusion, she was more alert and able to chatter. After another thirty minutes, she was seated upright in her bed. Another half hour later, she managed to find her way out of the bed and into a chair to eat the soup I had brought her. When the transfusion ended, she was practically bouncing down the hallway, in spite of her two broken hips! I was astounded at the transformation. To now find myself lying in a bed receiving blood makes me shake my head in puzzlement.
I found myself here quite unexpectedly. I had been expecting to have the Hickman procedure and the bone marrow harvest tomorrow, after which I was told I would spend one night in the hospital for observation. A transplant bed opened up at Vancouver General as of yesterday, so while I was at Gayle's funeral, a message was left on our voicemail that I would be admitted today instead of tomorrow. Mark and I came to the hospital this morning to take care of the admitting details (and to decorate my room a little - it will be my home for some time, after all). One such detail was bloodwork. I was told that I could spend the night at home instead of in the hospital, provided my hemoglobin level was not under 100. I was allowed out for dinner, but I was told to call in to the unit around 5pm to find out the blood test results. 99. Ninety Nine. Unbelievable. And so I find myself here, receiving blood. The logic is that I will lose at least a litre of bone marrow during tomorrow's harvest, which will surely cause my blood counts to drop (not to mention the high-dose chemo which will follow soon thereafter). So the fact that I'm already starting with a low hemoglobin count is great cause for concern.
I am finding it difficult being told that I must receive blood,
rather than being offered the option. A friend, Janie, brought up the
question of surrender when I mentioned this frustration to her.
She has a very good point.
I think the next several weeks would be easier for me to navigate
if I were to let go of my need to direct my own health-care, at least
for the moment. This will not be easy for me to do, in light of
the recent mix-ups surrounding my case here at the hospital. But
I think it would be valuable for me to develop a sense of trust that
the team working in this unit will take my life seriously. Important matters
are double-checked and triple-checked. I need to let go a little.
Yesterday's procedures went really well. The Hickman went in between 8 and 9am. It's my new friend. (Any suggestions for a name? It consists of a white tube sticking out of my chest that splits into three connectors for IVs. ... "Tri-Borg"? I don't know why I'm so fixated on naming the darned thing. Maybe I'm worried some doctor will ask me about its name ... When I was admitted I met the very nice doctor who is in charge of my case, Dr. Sheppard. He noticed I had a teddy bear with me, and he asked for its name, which I didn't know. He was quite disappointed, and he emphasized that all teddy bears on the transplant ward must have names. Mine's called Oliver Bear now -- in memory of my friend Gayle whom I often called Olivia ... Anyway, the point is that everything in this room now has a name!) The bone marrow harvest went well too. The surgery took about an hour and a half. (My nurse Robert aptly described it as having 100 needles stuck into my hips through my butt.) The harvest brought in over a litre. And it was good quality stuff, too! I had a big bandage across my butt 'til a few hours ago, but I have had no pain at all. Amazing.
Unfortunately, my hemoglobin count has been low. On my first day of admission I needed 2 pints of red cells before I was permitted to undergo the marrow transplant. After having the transplant, my counts have gone even lower (in spite of the donor's blood I was given). I am getting more blood right now. It's a VERY strange feeling to be having a transfusion, but it's gotta be done. I think my getting all this blood has SOMETHING to do with the scars I have on my neck from the temporary catheter I had put in and removed last week. The scars looked like vampire bites! And now I'm getting all this blood! Simple coincidence?!
I must say, everything is going well. I'm sitting through my first day of chemo as I type this. So far so good. There are all kinds of anti-nausea drugs ready and waiting for whatever may happen. The official terminology for today is Day -7. I'll get chemo on days -7, -6, -5, -4, -3, -2. Then on day -1 I get a little rest, and on day 0 (Thursday Feb 26), I get my marrow back. From that point on, it will be a waiting game to see my blood cell counts rebound. I won't be released until my white counts in particular reach a safe level. Because I'm being reiinfused with my marrow on Day 0, achieving high enough white counts could take a little longer than if I had been getting my stem cells back. (The stem cells just start producing quicker for some reason.) In any case, I've revised my expected stay down from 4 weeks to 3 weeks. =) Yeah, yeah, we'll see.
I've been eating as much food as I can get my little fingers onto in
anticipation of the likelihood that I'll have trouble eating for the
next while. I actually put on more than a kilo in the last 36 hours!
(We get weighed a lot here.) You should see the "food drawer" I've
put together here in my room. Lots of goodies.
Well the days of food are over for a while. I can't seem to keep anything down any more, but that's okay, because I'm getting lots of IV liquids. In fact I'm absorbing the liquids so well that one morning I woke up 5 kg heavier than the previous morning. So the doctors immediately put me on a drug to make me pee a lot. Joy. When you're lugging a 7-foot tall IV pole with 4 pumps and umpteen IV bags around with you everywhere you go, bathroom trips every 20 minutes are not a highlight of the day.
My room looks pretty cozy and homey. I was moved this morning from room 643 to room 645, and it's exactly the same only in reverse. I've got lots of personal photos up on the wall, posters, cards from friends, hearts streaming from the ceiling, and other good stuff.
The nurses on this ward are amazing. I'm enjoying getting to know each of them as best I can. They really take care to bring a ray of sunshine into my room each time they enter, even if they know they might be coming in to take care of something unpleasant.
Today I got a note from Bob, a fellow I met a month ago at the BCCA Relaxation group. His transplant was several weeks ago, and he is now at the point where he is able to walk around the wards, without being confined to his room. We established visual contact through our windows so we can tell when the other is also awake. And we have phone numbers and pager numbers to facilitate oral contact.
I feel Gayle with me here every minute. Her sunshine carving from Monique looks down upon me constantly. And when I'm having a bad time thinking thoughts like "If I ever relapsed again, I couldn't go through any of this stuff again," she reminds me of what is important in life. I'll do whatever it takes for one more day with the people I love. I know that in my heart, but it's easy to lose sight when I feel this miserable.
Having said all that, today has been a better day than yesterday. And
maybe tomorrow will be better yet. My friend Nat brought in a teddy bear
for me today which is a smaller cousin of the one Linda gave me a few
weeks back. I love them both! I named the big one Oliver, kind of as
a tribute to Gayle (since I used to call her Olivia, but I felt this bear
was a boy), Nathalie and I have named the younger cousin Hollinger
(in reference to the name Olivia had for me, Holly).
Well, I'm going to try to turn in to bed early tonight. Good night.
Today was my bone marrow transplant -- my second birthday. Not everyone is so lucky to have TWO birthdays! My little tiny hospital room was full to the brim with doctors, my nurse Liz, Mark, and my transplant mentor Ross (plus all kinds of technical gizmos). It felt weird while the marrow was going in, but tonight I feel good.
I haven't checked my email in days, so don't fret if you haven't heard anything directly from me. I'll be here for another couple of weeks probably (unless I can bribe my nurse -- ha ha I made her laugh). My mom is here by my side right now. I feel loved.
Day +1, my first day post-transplant. I had a rough sleep, with wild dreams, and night sweats (making me fearful the Hodgkin's isn't really gone). The doc and nurse I saw early this morning reassure me that the chemo is still doing its number, so if I still have a Hodgkin's symptom or two, I shouldn't fret. Night sweats can also be caused by the very low white blood cell counts I'm experiencing right now, so I've got to relax a little. My hemoglobin and platelet counts are both really low as well now, so I may get some blood products in the coming days.
I am really keen on going home soon, but it's still a tad premature for such hopes! I have already started eating on my own again, and I am told that the fact that home is so close to the hospital may also work in my favor when it comes time for such decisions. As much as I appreciate the care and attention I get around the clock here in the hospital, I long for the quiet of home, I crave not to be hooked up to machines, and I need the companionship of my kitty cat!
The mucositis which had been affecting my mouth to a mild degree became quite extreme over the weekend, making it difficult for me to eat and creating a high level of pain for me to tolerate. So as it turns out, the hospital is definitely the best place for me right now, and I'm trying to accept that for the moment. The nurses and doctors here are great -- I can't say enough good things about the level of care and support I'm observing (and receiving). All my needs are met, emotional, physical, playful, ... If my back is sore, someone is always willing to rub my skin. If I need a popsicle, someone takes a run down to the freezer for me. If I'm sad, someone has an uplifting word or a joke for me. Friends seem to drop in at the exact right moment, and they stay just the right amount of time.
Receiving blood products over the past few days has been really helpful. I have had a chance to observe firsthand the change in demeanor I previously only witnessed as an onlooker in Gayle's receiving of blood products. I felt the surge in energy which accompanies a rise in hemoglobin -- it's the stuff of life. I am so comforted by the knowledge that Gayle surrounds me at every instant here. The nurses and doctors sure do all remember her. And I feel her love in other ways too.
My messages must seem basic and simple these days. My mind and body are certainly working more slowly these days. I function on very basic and primitive levels -- washing my skin, stretching my muscles, sleeping, adjusting to nausea ... Right now I can hear tiny rain drops landing on my windowsill! What a lovely sound! Being in isolation, I have been cut off from fresh air, the smell of flowers, the touch of a breeze. I look forward to returning to some of life's simple luxuries.
I just had a visit from Kathryn Nicholson, the music therapist from the BC Cancer Agency. She's a sweetheart to come see me all the way over here at VGH. I'm really touched she came to play her guitar for me today. I asked her to sing "Somewhere Over The Rainbow" from The Wizard of Oz, and I cried all the way through. She sang it beautifully. She also sang me a song she wrote herself a couple of years back, it was uplifting and lovely.
Her voice has been in my head over the past week or so, not only because of the memory of many relaxation group sessions when she sang for us. Lis Smith recently brought me a children's tape she and Kathryn made -- the voices of Lis and Kathryn have lulled me to sleep on several occasions here in the hospital.
I learned an upsetting piece of news from Kathryn today. Someone who worked at the cancer agency for a long time recently committed suicide. She was friends with other people I know, it turns out, yet I hadn't learned her identity until today. Her name was Linda Nixon, and she was a nurse and counsellor at the agency. When I first became a patient at the agency over a year ago, she was about to leave for a one year sabbatical in Australia, but she made time to see me when I requested a session with her. She helped me develop some coping and relaxation tools. She put on a CD of Hawaiian music when she learned that I was lamenting a trip to Hawaii we had cancelled when I was diagnosed. She helped me create a mental image of a Hawaiian beach scene and then she encouraged me to put the image to paper. I'm looking at the image right now, as I transcribed it into my journal a year ago.
What a tragic loss.
My own progress seems somewhat trivial in comparison. Yet I will report on recent events. Happily, Mark's cold has come to an end, which means I get to see more of my husband here at the hospital! Yay! Mark has been patiently waiting as my white blood cell counts rise ... then fall ... as my temperature rises ... and then falls ... It's more exciting that watching a stock market index around here lately. The docs are willing to let me go home just as soon as my temperature stabilizes and my white counts get to a safe level. That won't likely happen for a few days, and in the meantime I'll be getting regular injections of a drug to stimulate my white cell production. I am looking forward to returning to the familiar surroundings of home, but meanwhile, I know I am getting important care right where I am.
The past year and a half has been filled with memories more painful than anyone should have to live through. I look around my room, and I am reminded of several of the countless reasons I have been going through this ordeal. The wooden sunshine carving Mo made for Gayle when she was in isolation ... The angel calendar my mom gave me, which hangs beside the makeshift calendar scrawled on my whiteboard to count down the days leading up to and beyond my transplant ... The Chinese new year blessings hanging on my wall, a gift from our friend Graham ... All the cards and letters I've received recently, which I've hung around my room ... The strings of hearts and the heart cut-outs decorating my walls and windows, a creative endeavour by my mother ... Photos of friends and family ... Posters I've collected in some of my travels ... Teddy bears given to me by Linda, Nathalie, Stu and Lietta, my mom, Holly ... An Irish lucky stone sent to me by my cousin Julia ... Boxing gloves for "the good fight" sent to me by my cousin Tina ... A little drawing of my IV machine "Borg" put on my whiteboard by my brother Trevor ... Gosh, and that's just the tip of the iceburg. Obviously there has been a tremendous outpouring of support for me.
Today I woke up feeling pretty sick. Hot, coughing, sneezing, nauseated, plain miserable. Now that I'm up and around, I am feeling a little better, but it's frustrating to deal with minor set-backs. I have also had awful diarrhea for a couple of days, and I have had trouble keeping adequate fluid in my body. I will be happy to stabilize so I can get myself settled back home. Today's good news is that my white blood cell count is finally rebounding! The trend over the past four days has been 0.1, 0.2, 0.3, 0.5! I was hoping to hit 0.5 today, and it happened! I'll be out of here in no time!
A really scary sensation that started about 36 hours ago is the faint trace of the old familiar chest pain. It may be my mind playing tricks on me, it may be congestion from what looks like a cold, it may even be pain from scar tissue that I'll have to learn to live with, but it sure is frightening. It brings up thoughts that this transplant wasn't enough to kill the Hodgkin's. This is my most chilling nightmare. In fact tears are streaming down my face as I type these words. I think about my desire to grow old with Mark; all the fun stuff we have planned; all the places we want to go; the hugs and cuddles; the laughter. The thought of losing that dream prematurely seems too unfair. I know we will all die sometime, but I would prefer to die much later.
There is still some possibility I will have to have radiation after this phase of treatment ends. I will not likely know for a month or two, as my immune system would have to be more stable before I could commence that kind of therapy (and the doctors will have to discuss what would be best). I feel like I'm running out of treatment options. And I'm tired of the pain and turmoil. I just want my life back.
Some of my recent posts have been raw and emotional. I'm in a pretty vulnerable place right now, and my emotions just seem to be spewing forth. Today I am trying to take things on a more day-by-day basis. I have been so focussed on getting out of here that I have become a wreck. My coping skills have gone out the window, though that's not surprising given the artificial surroundings in which I find myself confined. I drive my doctors, nurses, friends, and relatives crazy with my daily ramblings about going home. It's tough not to hold onto that thought though.
My white cell counts dropped a little to 0.4 today which felt like a huge set-back. It's not really a huge set-back, but it feels big when so much hinges on the blood count numbers. I'm aiming to be up to 0.7 tomorrow. Think multiplying neutrophil thoughts!
This morning, just after I woke up, I heard the voice of a screaming woman from across the hall. I asked a nurse what was happening, and she told me that the 17 year old girl in the room across the hall from mine was having a bone marrow biopsy. The screams made me feel her pain; in fact I remember that pain from my own two biopsies. I cried for a while -- for her, for myself, for all of us who have ever had a biopsy.
I just had a nice conversation with my favorite nurse on this ward, Angela. I always look forward to shifts when she is taking care of me. Although she has four patients tonight, more than she has ever had in her ten years as a nurse here, she just took a big chunk of time to shoot the breeze with me. I find her so caring and comforting. I wish more nurses and doctors on this unit could be like her. Spending the past year and a half being cared for at the BC Cancer Agency has spoiled me; my standards have become so high! I spoke to my oncologist from the Cancer Agency on the phone today: Tamara Shenkier. She's awesome. She plans to come visit me tomorrow morning, and I am looking forward to seeing her!
The doctors were here in my room thirty seconds ago. This is the first time they've walked in to find me out of my bed, in a chair, with the computer on my lap. I have been trying to distract my mind from the monotony that haunts me in this tiny room, and today I have actually been managing pretty well.
The docs said it looks like I'll go home tomorrow! =) I have to prove myself today by keeping fluids down (I have been on IV fluids 'til now), and I have to keep my temperature stable. (It's been 37.4, 37.5 for a while now. If it creeps up, I'm stuck here for longer.) I'm a happy woman!
My white counts are still REALLY low, but there's a tremendous bed shortage, with lots of people waiting to have transplants. I'm going to have to stay close to home 'til my counts rebound, only heading out for trips to the hospital where I'll still need regular transfusions for a while. Today I'm getting some platelets and some red blood cells -- that'll keep me going for a few days. I sure do feel like a vampire.
I hope to write my next update from home. Cross your fingers for me.
I am indeed writing this latest update from the luxurious comfort of Home. Ahh, it's so nice. It was touch and go yesterday morning at the hospital. I woke up with a temperature of 38, so the nurses didn't think the docs would okay my release. It turns out that the temp was likely due to the transfusions I had been given overnight. Everything else looked good, so after my 23 long days in that little hospital room, the docs set me freeeeee! I can't begin to explain how wonderful it feels to be back home.
I spent this morning at the outpatient clinic receiving IV antibiotics, and my bloodwork came back very positive. My white blood cell count DOUBLED to 1.2 overnight (and there are some important, hardworking granulocytes in there too)! My hemoglobin count went UP for the first time on its own to 119 -- higher than before my transplant. (There's a theory floating around that some of my blood donors might actually be STEAK-eaters!) The doc who saw me this morning was very happy with my progress. It looks like tomorrow will be my last day of receiving IV antibiotics. =)
It's unbelievable to think what I've been through. I am so grateful to be alive. Mark and the cat both seem pretty happy to have me back home too.
I am having a pretty magical moment. I sit here at home, observing a gorgeous rainstorm. Lightening. Thunder. Raindrops. Sunshine. The beginnings of a vibrant rainbow on the horizon. It turns into a full arc, colourful, alive, reminding me of my friend Rusell Kelly, who died a few months back. He loved rainbows. I take inspiration from my memory of him right now.
My feet are warmly covered in fluffy socks, my cat's head rests firmly on my lap. Some of the clouds overhead are light and fluffy, others are dark and ominous. There are traces of blue sky to be found. My mother naps in another room; my husband chatters on the phone to an old friend. I feel happy to be alive, overjoyed to be home.
It has been almost a week since I have last written. I am feeling a bit impatient about my progress. I know I must be grateful for how far I have come - and I have come a long way in the 23 days since my transplant. But it is frustrating dealing with the nausea, vomiting, dehydration, and weakness that still plague me. I want to feel that every day I have moved forward, but the fact is that some days I will fall behind a bit. This weekend, I am giving myself intravenous fluids to combat the dehydration. I sure am lucky that the medical folks trust me enough that I can do this sort of thing for myself at home. It sure beats making my way to the daycare facility when I feel like this.
Tomorrow morning I have an early appointment with a radiation oncologist at the cancer agency. When I relapsed, it was suggested that I may need follow-up radiation treatment after the transplant. Tomorrow is the first time this will be formally discussed and evaluated by the lymphoma experts who have guided me until now. Right now Mark and I both have the inclination to go ahead with the radiation. Doing radiation would increase my chances of achieving and maintaining remission. Yes, there would be potential long-term health risks, but at this point I know I would be extremely blessed to have a long-term to worry about.
This morning was beautiful as Mark and I joined many people who loved Gayle to scatter her ashes. We gathered at Spanish Banks, and each of us threw some of her ashes into the ocean. Her partner Mo kept some of the ashes in a special box to be saved until her own ashes can be rejoined with Gayle's. At one point, all of us gathered in a circle and held hands as we sang, told stories, had a moment of silence, and celebrated Gayle's wonderful life.
I had a nice reunion with some friends from the same retreat where I met Gayle. Dianne is visiting from Toronto, and she came over for tea after the spreading of Gayle's ashes. Dianne is a gentle, kind soul, and I have missed her immensely since she moved away from Vancouver last summer. Another friend from the retreat, Ann, just returned from her winter-long vacation with her husband. She arrived at Spanish Banks just as things were finishing up this morning. Because it had been a long, chilly morning for me, I couldn't stay long to visit with her. She wrote to me a lot this winter, and reminded me how beautiful the moon is. Every time she looks at the moon at night, she thinks of the whole gang from the Callanish retreat. Now I do the same.
I am pleased to inform you that I am still typing from home sweet home. My temperature has stayed down, my blood counts have continued to creep upward, and my energy is picking up (slowly -- I don't want to rush into cleaning the house or anything)!
Today I met with a radiation oncologist, and as soon as my blood counts reach a nice stable level (2 to 4 weeks?), I'll commence 4 weeks of daily radiation therapy. The radiation field will be from the middle of my chest up to both sides of my neck. The idea is that by doing radiation now, my chances of attaining and maintaining remission are increased. It is easier to bash the Hodgkin's over the head now, while it is weak, than it would be to try to treat a new recurrence all over again. The odds of being successful are much higher this way too.
There are short-term and long-term complications to radiation therapy, but frankly I'll take them if I can be that much more confident of HAVING a long-term to deal with! =)
I don't think I ever mentioned that Mark lovingly and supportively shaved his hair VERY short as soon as I lost my hair from the chemo. He showed up in my hospital room one day wearing a baseball cap and a big grin. I was pretty shocked when he took off his cap! What a sweet guy! Poor Mark, his cousin Tim didn't even recognize him at a restaurant a few weeks back. Well, Mark's hair is now growing longer, but my hair shows no signs of making an appearance just yet. Ah well, it's a good excuse to wear fun hats.
I had a visit at the outpatient clinic today, and things are still progressing well. My platelets are in the normal range for the first time since the transplant! This likely means I will be able to start radiation treatment sooner rather than later. (I am anxious to get started because I have been having some worrisome symptoms.) I also found out today that I can have my Hickman port removed from my chest tomorrow! Yippee!!! As helpful as this little friend has been over the past six weeks, I will be happy to part ways. I am really looking forward to taking "real" baths and showers without worrying about water getting into places it shouldn't.
I am starting a new drug today, a drug which may suppress my blood cell counts again. It is a strong antibiotic which is used to prevent and to treat a lung infection called pneumonitis. This condition often results following the high-dose chemotherapy I underwent for the transplant. Pneumonitis is also a frequent result of parts of the radiation I will undergo (the lungs are in the radiation field).
Yesterday Mark and I took a drive down to the states to take a look at the Tulip Festival near LaConner, Washington. We saw vast fields of colourful tulips and daffodils - it was spectacular! We also stopped and ate all kinds of junk food along the way, a sure sign that I am recovering nicely. This past week I have been able to eat all kinds of foods without too much trouble. I am really glad, for it has been tough dealing with the nausea and stomach upset.
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